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So Very Frustrated...

Episode CII - never get tired of trying


I might need some type of sedative before the week is over. Seriously... can I get a doctor to prescribe me something... and make it something strong!!!


Monday I had the rushed MRI at the location I did not want, for what? I never got a call about the appointment with the Neurologist. Since they rushed the process you would assume that an appointment would have been made. Right???


Because I had heard nothing I politely called the Cancer Center and asked about the appointment. They assured me they sent the referral over and someone would call me back. So, I waited a few more days....

I politely called again trying to find out if an appointment had been scheduled. Nope. I was told that I should be hearing directly from the Neurologist's office. So again, I waited. Then I called again. Third time is not a charm... it is irritating. I got a very abrupt you can call their office and bug them yourself response. Fine, I will!

So, I called the Neurologist's office to see if I can get an appointment. Guess what? There is no referral there... they have no idea who I am and why I am calling. I knew something was not right. Argh!!!

I immediately called the Cancer Center's office and they tried to assure me that I was wrong. I explained to them that it was over nine days, they just forgot to send the referral, and they made me rush my MRI. Just resend the thing! But what I was really thinking was someone messed up and totally forgot about me!!!!

The referral was properly sent and surprise, surprise, I was called by the next day. After much ado I finally have an appointment next week right before the holidays. I guess I should be glad I am getting in before the end of the year the way I am going!


Yes, I think I might be going crazy here


Not to worry the Cancer Center called me back to reiterate that it was not their fault. A simple sorry would have been enough. Even though they did not send the referral and that it was basically lost in paperwork, it was not their fault. I still have not figured out who's fault it is then, but it really does not matter. I just wanted an appointment. I guess my constant calling that annoyed them was necessary. Ha... being annoying is sometimes good!


Can you tell that I am seriously worn out and in pain?


It has been difficult dealing with my physical limitations. I am sick of feeling bad and my body continually reacting to daily living. Post cancer living is definitely not what I was hoping it would be. Heck... it is down-right bothersome. I am past six month post-treatment... that means I should be feeling better... at least a little better!!! Give a girl a break!!!

We all know that my general mood is upbeat. Generally, I am pooping rainbows and skittles, but I have my moments and my frustrations in this horrible post cancer existence. Seriously, I do not think the doctors or people really understand the continuing effects after cancer treatment. 


I had to go there... 
Pooping rainbows and skittles is positively beneficial to your health!


When the chemo and rads are finished it is assumed that we are ok and finished. Sure, we have gone through the trenches… we have fought… we are tired… and let’s be honest we are not done. There is continued medicines, appointments, scans, blah, blah, blah… it is like the craziness of cancer did not end and I think we all assume it should end. It really should end at some point… right????


It seems like a never ending fight...
my own personal Spy vs Spy


For some people they end treatment and gain some normalcy. For others the post cancer side effects become life long struggles. From hormone therapy to lymphedema to whatever else ails you... life does not always bounce back afterwards. 

Cancer is not over because the “cancer” is gone. I am not even sure it is gone, it could be just undetectable. I think there is a lot of information out there that is just not discussed, read, or explained that helps define surviving cancer and recurrence - click here to learn more.


Will I ever get down from my soap box?


My doctor has never even used any terms that implies my status. I use the term NED (no evidence of disease) based on the fact that my scans are clear. My doctor will not use any specific name and cleverly avoids labeling what I am right now. I don't know what I am?!?!?!

However, with so many people asking I have to say something... or put it in terms people would understand. Being cured is not really an option for my type of cancer - which I understand and I am ok with. Basically, I am not looking to be cured... I just do not want to come back! 

The idea of what cancer is and what it does to patients is all over the place ranging from the media to internet to people who know people who have had cancer. It seems that even with all that knowing, the idea of living post treatments is totally misunderstood.

Even the people I know assume I am finished which means I am cured... I wish. That since I survived I should be planning some grand adventure to climb Mt Everest or something wickedly amazing to celebrate. Instead, I am just trying to make it through the grocery store without having moments of excruciating pain. I think Everest can wait!




Sure I may not be the typical post cancer patient, but I know I am not alone. With the increasing numbers of survivors, I think doctors are being told of complaints they do not know how to treat. It feel as if they just want to treat the cancer and not really deal with the difficulties of surviving with issues cause from treatment.

Plus, we have more survivors now and more people willing to share their experiences… we are realizing that the survivorship does not mean it is over or easy or the cancer damage goes away. Even the statistics are showing an increase in unmet needs, click here to find out more. 


In my head...


Thank goodness for self advocacy and a strong constitution. If I had not kept after the doctors I would probably still be sitting around waiting for an appointment. It never hurts to get involved and speak up for yourself. It is exhausting, frustrating, and enter-any-explicit-word annoying to fight for your health. But it is your health and you are worth fighting for. Time to get enter-any-explicit-word annoying!!!

I have found it is good to know that we are not alone in the post cancer craziness. Thank goodness for the other bloggers and readers who are trying to find their way through this. The other fighters, survivors, family, caregivers, and loving people all finding each other and trying to find solutions. Maybe if we complain enough or join forces to make change then it will happen.



Episode Reference: Louisa May Alcott's Little Women:
“Watch and pray, dear, never get tired of trying, 
and never think it is impossible to conquer your fault.”

Comments

  1. Amen! Well said! Thank you for being the voice of many...

    ReplyDelete
    Replies
    1. Bonnie your blog is also helping so many people find there way through all this. I am so lucky that I have met you and now have you as a friend!!!

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